Research Blog

A special contribution by guest blogger Alice Shapley

Our beautiful and amazing 7‑year‑old daughter Anna has Prader‑Willi syndrome (PWS). There are so many things for which I am incredibly, deeply proud of Anna, but today I want to talk about the role of hard work—something that I believe many PWS families know quite, quite well.

The Foundation for Prader-Willi Research announces our first round of Research Awards in 2020 totaling $912,251. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, has awarded over $14,000,000 to research since 2003.

COVID-19 has made all of our homes feel a bit smaller these days... Living together 24/7 has surely whittled away at our patience and increased everyone's anxiety. In this webinar, Patrice Carroll, Director of PWS services at Latham Centers, gives advice on how to manage behavior challenges related to Prader-Willi syndrome during this stressful time and answers questions from our community members around the world...

On May 1 we are kicking off Prader-Willi Syndrome Awareness Month! Since 2010, PWS Awareness month has mobilized the PWS community to raise awareness and educate others in their communities and across the country.

With COVID-19 keeping many of us indoors and isolated from our friends and family, we are all seeking new ways to stay connected and spice up our days! A few innovative community members have shared fun activities they have found that allow them to connect with their family and friends with the added bonus of raising a few dollars for PWS research.

A new pilot project is seeking funding to map the genomes of 50 people with PWS and integrate that information with the Global PWS Registry data.

This first-ever PWS Genome Project seeks to help researchers better understand differences in PWS symptoms and severity from person to person as well as issues of safety and efficacy of treatments in each person.

COVID-19 has made all of our homes feel a bit smaller these days... Living together 24/7 has surely whittled away at our patience and increased everyone's anxiety. In this webinar, Patrice Carroll, Director of PWS services at Latham Centers, gives advice on how to manage behavior challenges related to Prader-Willi syndrome during this stressful time and answers questions from our community members around the world...

Although many symptoms of PWS are difficult to treat, impaired vision is a place where corrective lenses and/or surgery can make huge improvements. Data from the Global PWS Registry shows that the most common vision issues in PWS are nearsightedness, and strabismus, which is when the eyes don’t look in the same direction at the same time (commonly known as ‘cross-eyed’)...

Most of us are not trained educators, yet with COVID-19 closing schools around the country and many of us are facing distance learning for the remainder of the school year. In this webinar, Elizabeth Roof, Senior Research Specialist at Vanderbilt Research Center, shares strategies and tips for teaching your child with PWS at home. Elizabeth has kindly shared the slides from her presentation...